New: caligurl

[Caligurl]

Hello I am new to your forum,
My background, I have had Crohns for 23 years , 24 in Jan 2013. I am a serve case, with the first ten years just a lot of pain and mostly vomiting, then in 1999 my small intestine perforated and the next decade it got very bad and had three more major surgeries for strictures and fissures. In 2009 I happened to be living in Pittsburgh PA and was urged to go to UPMC "the digestive disorder center" (apparently tons of people in the BURGH have Crohns) I ended up with a GI who also has Crohns and had a very similar case. He knew I had a stricture but the couldn't find exact location. Eventually after months of hell, I wanted to go back home to Cali for a vacation, he urged me not to and I said "that's not an option." He gave me the steroids (can't remember the name) for the small intestine only because I refused to take predisone because of the side effects. The other GI's from previous hospitals prescribed it all the time instead of doing surgery and helped expedite the arthritis in my hips! As soon as I returned he asked how it went and I said I was fine compared to what I was going thru, he said go talk to Dr W for surgery! I was shocked, Surgeon was shocked, but my GI was 100% right! I had my last surgery in August of 2009. As I recovering I had to return to California for my son was diagnosed with a thyoma tumor that October. This is my home but I do miss the care I received there at UPMC. I have had fissures, mouth ulcers, uncontrollable bowels, borderline anemia, all the hospital "lock downs" etc...I know other people have it worse than I, and I am grateful. I am currently taking Humira and vitamins (including my b12 injections) ONLY! Whoo Whoo! ...Super happy face...
Life with crohns is far from easy and I know that I need to enjoy my life when it is easy (no pains, chronic diarrhea blah blah blah) So I go to the beach a LOT! I walk in our mountains and try to do something new as much as possible. I would never wish this disease upon anyone! ANYONE!
Ok, that's it, thanks!

 

[Earnellzwifey]

Well I would like to say welcome to the group. You have been through a lot over the years. Glad to hear that you have not needed any new surgeries since 2009. I am sorry to hear about you son, I hope he is doing well.

I know what you mean about having to lose better health care. I live in Mississippi and the drs here are just not very good. I have seen specialist in other states but it is very expensive and not to mention that long car rides make me feel like crap since I have arthritis in my hips, knees, and spine.

I hope that you find a good GI that will continue your care so that you continue to get better.

 

[David]

Hey there Caligurl and welcome to the community

How do you feel the Humira is working for you at this point?

We're here for you anytime you need us.

All my best to you.

 

[Caligurl]

The Humira is working way better than all the rest...
i.e remicade, asacol, mp5 etc. I have taken all but 2 of the meds they have out there for crohns, I block it out now, since I am actually "living life" again!
I highly recommend if nothing else does...it's wicked expensive and they make a big deal about approving you but once they do they make sure (manufacture) you can always get it! Free even! I perfer the epi pen, but the hospital out here like giving me the needles (YUK)...Ok I am rambling, got hit the pillow! Thanks for the board and all the advice and warm welcomes...